Wednesday, October 06, 2010

The Schaft asked a very good question down below, in the comments of the "Minions" post: Why on earth would I be asking for feedback on a tips jar now, rather than looking around at my local community and seeing what needs to be done there?

It's a question that deserves an answer. Here's the answer:

I donate my time, money, and rather a lot of food to local community groups and food banks. I give X amount every month to stinking pinko liberal commie causes, add extra to my gas bill to help keep the heat on for other people, add extra to my electricity bill ditto air conditioning, and give my time and expertise (such as it is) to places like my beloved Planned Parenthood. I do all this already.

What struck me when I was diagnosed with this cancer is this: you can get help for all the shit you need help with, except for what you need help with the most. I've been all over the Innerwebs, and the resources for people with orphan diseases--especially ones that are falsely linked in the public's mind with "lifestyle choices"--are slim to none. Try being a person with no risk factors who has a disease that, at best, 339 other people will be diagnosed with in this country this year. It's a freakin' desert.

If I were in danger of freezing, baking, starving, or having an abnormal Pap test, I could find help. But now? When I have questions about how radiation might affect my thyroid, or the surgery will affect my voice, or how an obdurator might affect my sex life (not that I have one now, but hope springs eternal)......nothing.

That's what's different. That's why I suddenly care about people who are diagnosed with such wierd, off-the-wall shit that, if they're not in my position (working for a research-driven institution; having a surgeon who's one of the few who's seen hundreds of these things), are screwed.

Not being able to find somebody like me sucks. I want there to be somebody like me out there the next time somebody like me goes looking.

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Having cancer is rather more complicated than you'd think at first. Thanks to Beloved Friend Pens, I have now--drum roll--ordered a TV set with a built-in DVD player, and have signed up for a month's worth of Netflix.

I was such a newbie that I typed it in as "netflicks" on my browser.

I've also, since I won't be able to talk, ordered a new phone with a better keyboard and unlimited texting.

And I've got a list of the things I need to buy a month's worth of: dog food, cat food, toilet paper, detergents of various sorts, painkillers, saline solution for contacts, you name it.

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I've got to make my own picture board. The ones at the hospital won't cut it: they have symbols for "pain medicine" but not a symbol for "bring me the good drugs, dammit!" or "get that asshole out of my room."

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Met with the speech therapy person and the physical terrorist today. They're both going to be looking for me after surgery. I also have nurses lined up and people reserving a room for me.

Too much to do. Too much time to do it in; not enough energy for any of it.

You need a handheld flip chart or key ring of little laminated cards that say all the stuff the picture board does not address. Leave some blank ones so you can write on there with a Sharpie for all the annoyances you can't even think of now.

I'm being funny, but I heard of somebody who had one of these after he had to have a surgery which also took away his communication. The cards said things like, What is the plan for me today, for example.

The bummer about an orphan disease is you're thin on the ground and there's no support group. Hopefully your surgeon can help you understand it to death while you're still easily communicative.

If you have a laptop and a decent microphone (or can borrow one) then you might like to consider making yourself a digital voice with Cereproc, who did Roger Ebert's voice, or something similar. They need about 40 minutes of speech, and for the speech to be transcribed (they sensibly suggest reading newspaper articles or similar so that it doesn't need transcribing).

Knocks blocks off picture charts, anyway.

Learn the alphabet in ASL, and get your buddies to as well - it'll be really useful for quick bits of chat.

I've been a communication aid user on and off for a couple of years now - have they said roughly how long your speech will be out of commission?

Out here in Lala land the phone company will hook you up with a TTY. This keyboard telephone can be used with those in your life who dont text like your Mom or EMS. There is an operator you can type to and then she will talk on the phone for you(called TTY Relay) to say, order takeout. You just need a note from the doc to the phone company, and your doc most likely has a stack o' these forms. Hope actual info does not count as advice.

You've not thought about food for you. I think my mother lived on "Resource Breeze" fruit drinks andBoost chocolate with high end ice cream and malt powder for a while. She didn't find pureed foods very palatable. Resource brand is at Walgreens under "Medical Nutrition." They don't carry it in the stores - you might want to order some sooner than later. Before surgery - eat everything you love for it might be a while before you can manage to chew and swallow a variety of food. The day my mother could eat a good croissant was one of the happiest days of her post-surgery recover.

Am I right in thinking your surgery will be at sunnydale? Have you given you pals your "do not let them nurse me ever" list. We have a pact we will protect each other from certain overly helpful nurses if the need ever arises. (Our hospital is the only game in town for most of us) PS our couch is sill on offer but Im not so sure we will have a house... will keep you posted :-)

Jo, I have asked at ACOR if they have a mailing list appropriate for your cancer. OTOH, I know the questions you listed are not specific to PLGA. ACOR has lists for other rare cancers; I am waiting the reply. I've been a volunteer list manager for the lung cancer lists they host for many years; even non-smokers get LC.

Well, I've always been fond of Vonnegut's asshole. So, you could start there. BTW, in Googling for "Vonnegut asshole," I discovered a book titled "The No Asshole Rule," by one Robert Sutton. It's on my wishlist now.

Netflix has a box called Roku and it allows you to watch all movies and TV series that stream for free. I love this for its convenience (you don't have to put anything in the mail, nor to do have to wait to receive anything.) I just watched all of the Futurerama series:) You might want to look into this.

Don't forget kitty litter. And some kind of cleaner for "accidents" - cats have a tendency to get literally pissy when things change.

You might seriously consider getting an automatic litterbox. Get the kind with the little plastic box that the poop goes in. Toss it out once a week, put in some more litter and you're good to go.

Oh, and one more thing - get "Hypocrite in a Pouffy White Dress" - you and the author were apparently separated at birth and when I gave this book to my grandmother to read during her hospital stay she laughed so much the nurses kept coming into the room to check on her.

3. email Bick Pratt, the developer of MyTalk & tell him your story (he's a great guy) & he'll help you get started -- the advantage of his app is that it uses personal voices rather than synthesized speech. The menu is picture-guided but the output is real human speech

ACOR has a Head-neck list which could put you in touch with people who have to contend with issues you will be contending with (obdurator, PEG, etc.) even tho they don't have a rare cancer. ACOR also has a Rare list. Oralcancerfoundation.org has a support forum. Good luck.